The Many Paths to Inclusion

by Betsy McAlister, Guest Contributor

The realization that something is unfair comes in many forms, and often during unexpected moments. Our moment came last year when my older daughter was a senior in high school. She had tears in her eyes after listening to me explain that her freshman sister was being asked to drop choir due to vague reasons that it might be too difficult.

Her sister, born with developmental disabilities, had been in choir since elementary school, and we thought her participation in the high school choir was a given. And yet discrimination and the difficulties of inclusion were unfolding, once again, in our family life.

As a parent, there have been many times I have faced a teacher, neighbor, friend or stranger who does not understand inclusion; however, my mind kept questioning how my younger daughter could enjoy the benefits of a music program if she wasn’t even in the class.

The reality is, physical presence is the first step to inclusion. If my daughter is not even at school events, public places or family gatherings how can she participate? Where is her dignity of risk? Shouldn’t high school, for her, be about new experiences and classes and not about exclusion and imposed limits?

We were faced with choices: educate, push, pause, agree or disagree. In this instance, my mandate from my younger daughter was clear: it was time to push.  She repeatedly made it clear to me she wanted to stay in her choir class, and she needed help in advocating. This opportunity was not about a power struggle between her teacher and me but about my daughter’s passion for music and her goals in high school.

As my husband and I strategized and attended numerous meetings, we agreed that we had to do what is really hard to do: we listened. We went to every meeting requested, and we listened...again and again and again. We listened when the teacher mentioned that my daughter’s presence was not fair to other students because it was a performance choir. It was hard to listen to that, but we did.

We engaged our daughter in the process, made our expectations clear and found her additional support for the class. We refused to agree to her being transferred out of choir, but we also came to the table with ideas, openness and support. And through the process we found her choir teacher became willing to work with us and offered many great suggestions and ideas.

This September, at a fall choir performance, my husband and I listened to a few choir members on stage share why they loved choir. Each mentioned the beautiful music first thing in the morning, the friendships, the learning, and the caring atmosphere of their “choir family.”  One student gushed, “Choir is just the best.”

My husband smiled at me as we understood those same experiences were just what we hoped our daughter would enjoy. The path was difficult, but there she stood in a beautiful dress on stage singing.

Alexa's Story: Why Not Me?

Throughout her childhood, whenever Alexa’s parents talked about her younger sisters trying something new, she would ask, “Why not me?” It was hard to accept, but Alexa’s mother never really had a good answer. So, as Alexa pushed the boundaries, they felt their way through the challenges of creating as typical a life as possible.

As they got older, and the topic of getting jobs and moving out became a conversation with her sisters, Alexa once again asked, “Why not me?” After all, she was the big sister. Her parents agreed; they shared the same expectation of work and a life outside the family home for all their children. For Alexa, as always, it would take extra help and some trial and error.

With help from her family and paid services, Alexa found employment and an apartment that she shared with her grandmother. Later, when her grandmother moved out, Alexa and her family advertised and interviewed a new roommate without disabilities and closer to Alexa’s age.

Sharing her home with a peer that has an active social life, including online dating has had Alexa asking herself, “Why not me?” She’s had a boyfriend, but being around her roommate made her realize that she was missing something.

“In real life, it is hard,” she says, sipping her iced tea at a local coffee shop and teasing her mom about being a "drama queen" over the topic of dating. “I’m a little bit picky. The guy has to be cute, but also nice and kind.”

She says that it was her idea to try online dating. Her mom found a site that’s for people with disabilities that they both felt comfortable with. “It’s like email,” Alexa explains. “Most of them live on the other side of the country.”

When asked how she deals with her mother’s concerns, Alexa says, “My mom was more like the worry wort. So, basically, I decided I wasn’t going to tell her everything about it.”

“Just like her sisters,” her mother says. “Nobody tells me anything.” Alexa beams and laughs at the compliment.

She is proud of her independence. “I’m more mature now. I take it serious. I do want a love life. It makes me feel lonely [not to have one]. I want a guy who will understand no sex and no kids. I need a guy to respect that and not take advantage of me—online or offline. I’ve always felt that way.”

When asked where she gets this wisdom from, she says, “Myself.”

Her mother perks up. “Maybe your family had something to do with the way you turned out?”

“No. I don’t think so.”

The laughter and banter continue. Alexa says she’s not as involved with the dating site as she was at first. “If I check messages, it’s only on the weekends.”

Her patience is as strong as her perseverance. As she reflects on dating and finding someone to be in her life, she recalls a movie she’d seen, The Great Gatsby, starring Leonardo DiCaprio. “Leo waited a long time for her. I just decided to wait for a time the way he’s waiting.”

When it comes to finding that special someone, Alexa makes it clear that she's no different than anyone else.

The Friendship Dilemma: Finding Peer Activities

Continuing our series on friendship, the following thoughts on making friends are offered by a parent whose son has significant disabilities.

The topic of friendship for my son poses an interesting discussion. He is non-verbal and on the lower functioning end of the developmental spectrum.

Truthfully, and sadly, I haven't had making friendships as a goal for my son. He requires a caregiver to be with him where ever he goes. Oftentimes logistics, lack of energy, and/or lack of time are extra hurdles that get to be too much. My focus has been on finding activities that he would enjoy, or exist as a part of life.

Two way communication is the beginning of typical friendships and also what sustains and nurtures it. When that doesn't exist, then being in the presence of another for a lengthy and frequent amount of time is the only way to establish a friendship/relationship. 

Currently, my son attends a day program all week, and a bowling peer group monthly, and I consider his peers there to be his friends, although they have rarely gotten together outside of the respective events. Outside of these activities, his best friends are his siblings.

Friendship: Expecting the Best, Preparing for the Challenges

by Susan Atkins, Guest Contributor

Helping our kids make (and keep) friends is a huge challenge. There never seems to be anyone who can help, or any easy answers; however, over the years, a few tips I picked up along the way helped me with all three of our girls, especially Alexa, who was born with Down syndrome. 

Tip #1: Have High Expectations and Hope
When your child is different—diagnosed with a disability—it is more difficult to figure out how to help them make friends, especially if they don’t have language and social skills until a later age. Alexa was one of those kids. She always had a great smile, but did not have the language to interact much with other kids in those early years. I had to hope and expect that with help—from her family, the neighbors, and her school staff—she would make some friends.

Tip #2: Provide or Create Access to Other Kids/Inclusion
Someone told me “you have to have access” to make friends. You have to be in class, at church, in the neighborhood—not home sick all the time, not in the house, not in a special ed class all day. Other kids have to spend time with you to get to know you before they will be your friend. I also felt that you have to be around other kids who are talking and acting socially appropriate if you want your child to learn those skills.

Alexa was a watcher and would imitate what the other kids did or said. I wanted her included as much as possible, which was often not easy for the schools. But it just felt right. I wanted her to be part of our society, not on the outside. I also wanted the other kids to get to know Alexa and find out she was "more alike than different.”

Once in school, Alexa had a Circle of Friend’s group every year. Circle of Friends is a group that’s facilitated by special education staff. Usually we would get 6-7 kids (without disabilities) from a class who would come.

The special ed teacher would facilitate the lunch group once a week. I used to buy pizza once a month for the group and stop in and eat with them to get to know the other kids.I also tried to get to know the other kid’s parents as they were the ones I had to “sell on” letting Alexa come over to their house or they come to ours. Once she was in high school the “peer tutor group” took over and ran the Circle. It was great. They planned everything, and even took the kids off campus to movies, out to eat, etc.

Another way to provide or create access to other kids is to make sure that your child is included in the first and last periods of the day at least. Those are the important times for kids get to know one another, as they listen to announcements, hang up their coats and back packs.  And make sure your child is “part-of” a regular classroom, not just included at lunch or recess. Again, you have to have Access and Inclusion to make friends.

Look for non-specialized programs and groups for your child to join. Girl Scouts and Camp Fire and Boy Scouts can be great inclusive groups for your child. Alexa was in a Girl Scout group in grade school. Later, she went on to join the Choir and also was in ASB and Leadership Class. Another parent and I pretty much helped plan and bought all the supplies.

Tip #3: Make Your House a Really Fun Place for Other Kids
Role play and talk about “fit in” behaviors at every age: not hugging the kids, just saying hi, not standing too close or talking about or doing “too personal of things.” Age appropriate behaviors: dress like the other kids, watch the same movies, listen to the same music, play the same computer games, read or listen on tape to the same books, be able to play on the playground with them. We needed to give Alexa things she could talk about and do with other kids at every age that they could enjoy together.

Tip #4: Network and Get Support
Make sure that you get the support you need from other parents. Join Parent to Parent and other support groups. Take time for yourself and get away with your partner/spouse.  I needed a life outside the disability world. And many of these tips I learned from other parents before I tried them out on Alexa and her sisters.

Today, Alexa is all grown up, working and living on her own (with support). Things are not perfect, of course. She would like to find a “guy friend” to be best friends with. We are still working on that, as she wants that in her life. Facebook has been a great way for her to keep up with her friends and she really enjoys talking with them that way.

If I can be of any help with this please email me, Susan Atkins, at: Statep2p(at)earthlink(dot)net

Best Friends Forever? By Rachel Nemhauser

Nate is an awesome kid.  He’s funny as hell. He’s silly. He’s energetic. He’s creative. He’s non-judgmental. He’s sloppily affectionate and tremendously sweet.  His enthusiasm for the world around him is contagious and his laugh is completely infectious. He loves whole-heartedly and has never said a mean word about another person. Like I said, he’s really an awesome kid.

With a resume like that, you might be surprised to learn that Nate doesn’t have many friends. The phone doesn’t ring for him very often, he trick-or-treated alone this Halloween and a four day weekend just went by without any playdates or get-togethers.  He rarely gets invited to birthday parties, spends most of his time with his family, and sees his peers almost exclusively at school.

Of course, Nate’s developmental disability, limited vocabulary, excess drool, and unusual behaviors make enduring and meaningful friendships a challenge for him.  His lack of a strong desire to cultivate friendships doesn’t help.  Most days he’d rather do an activity of his choosing than accommodate the preferences and tastes of a playmate. He prefers his own house, toys, and favorite TV shows to the alternative of trying something new or different. He has little interest in modifying his own behavior to impress another person.  That’s just not the way he rolls.

With all of that said though, Nate loves being around other kids.  He doesn’t always want to join in their activities but he likes to observe and hang out close by.  He loves to be included in the noise and fun and chaos, and is especially thrilled if a peer shows interest in his interests. On the rare occasion that he does attend a birthday party, there is not a single other guest more enthusiastic when the birthday kid blows out his candles. Nate is joyous around other kids and he’s not afraid to show it.

As his mom, I yearn for more friends for him.  Trick-or-treating with a big group of kids is a blast, and going without friends can be lonely. Getting invited to a birthday party feels so good and being left out doesn't.  Having a friend call to check in on you can turn around a bad day really quickly.  Feeling accepted, warts and all, from someone outside your family is so completely validating. I desperately and whole-heartedly want those things for him. I also know that my companionship is not enough for him, and that he needs friendship for all the reasons that everyone needs friendship: company, entertainment, support, feeling a part of something, and so much more.  As he gets older and becomes an adult, I expect his need for friendship to grow exponentially.  I can't plan to be his mom and his best friend for the rest of his life; he deserves so much more than that.

How do I encourage friendship to a kid not missing it or wanting it?  How do I convey to Nate’s classmates and their parents that he would welcome being included, and has a treasure-trove of gifts to offer?  Like many aspects of raising Nate, our quest for friendship is a work in progress. 

Please share your stories and check back soon for more perspectives on disability and friendship. We look forward to hearing from you and learning about how others have answered these very complicated questions!

Facebook Post by Anonymous

The following message was posted to Facebook recently, on a private group wall, and is being reprinted here with permission of the author.  While meant for a limited audience, its message may resonate with many of us.

Over the last few weeks, well meaning friends (even my husband), have warned me to not share too much, least people judge unfairly. That I should remove posts. I want to be clear, I am very aware of how it may appear to some. That there are those that may, as my husband fears, think less of the person I am.

Well, shame on you. Shame on society. I am not weak for admitting that I need help, I have been through things that most wouldn't come out the other side. Seeking and accepting help does not make one weak, especially given the alternative. I have been breaking myself to try fix my family and everything on our plates, to try and help our special needs child. If I do not reach out for help, it will end sadly. How unfortunate to live in a society that is hush-hush on things like suicide. Where I would feel shamed into being quiet about what is going on now.

The truth is that many special needs families are greatly suffering, but they suffer in silence. I know this because of the private messages they send me. It's no coincidence there's a 90 percent divorce rate, a gross increase of a anxiety and depression, suicide...the articles you read about the horrific end with these families sometime is not a joke. There are reasons for these things. It is inexplicably hard.

Knowing full well that there are those reading my posts that aren't capable of understanding or will judge our situation, why do I still share? I share for two reasons: 1) There are those that have pioneered these roads already, that know what to do and what resources there are. Who actually can help. They have spoken up and pointed my family in the right direction. Even though there are those that have turned their backs, there are those that have breathed life back into my family and are helping us to keep going. 2) This is the biggest reason. Perhaps you are also living in the discovery phase. Perhaps your friend is. Living the life of limbo hell, confused and drowning....feeling hopeless. You ARE NOT alone. When things are better, I will be helping these families. This is not ok. I hope watching our journey unfold inspires another mama to keep fighting, to seek help, to take care of herself and her marriage, to find her voice and ask for what she needs. I hope it inspires even one person, to speak up and say "Things have gotten so bad, that I feel like taking my life is the only solution left." Are those words scary? Very. Is it hard? Hugely. But they are the words that can save your life and start to help make things better.

Things had gotten so bad that I had an entire plan, start to finish. A way to keep the children safe and someone to be here immediately, a way so my family would never see, the best way possible. I even researched all the details. Because I spoke up, we are starting to get help. My husband's dad drove here from Spokane when he finally broke down crying and admitted to how awful things have become. A friend of our family took our son for a desperately needed break for him and everyone. Community members have lent a helping hand to help us get our house in order. My husband is taking time off work. We are finding counseling for the whole family. Today I am going to either be hospitalized in-patient or out. I hope out, but I am now open if not. We have learned of more resources to help us, to help him. Because of all of this, I am choosing to keep fighting instead of the plan I had intended to follow through with as of Friday.

Let me repeat that. On Friday I told my husband through tears that I was sorry, I simply could not go on anymore, that there was too much pressure and no hope and no end and I was a prisoner in my home.

If I hadn't shared, I could very likely not be here anymore. I am not saying this to scare anyone. I am sharing this in the hopes that someone speaks up. So friends and family don't end up losing someone who felt they should not share. Who felt they should suffer quietly. Please please please don't. Ask for the help you need, but first learn what that help is.

http://www.huffingtonpost.com/ellen-stumbo/7-practical-ways-to-help-a-special-needs-family_b_4215728.html

Holly's Story: Food, Music and Nice People

Profiles in Employment: A Celebration of National Disability Employment Awareness Month

What do you like most about your job?
The really good  food. I get free lunch!

Is there anything about your job (or you) that would surprise people to know about?
The music is really cool.

What has been your best experience about working at Cafe 43 so far?
I have really nice people to work with.

Ben's Story: Doing Things His Way

Ben Huwe owns his own business, selling gift bags and cards out of Elk Drug Store in Dayton, WA. He likes being around people and having his business inside a store where people are coming and going, and there's a lot of activity.

Ben Huwe Cards & Designs (Dayton, WA)

In the past, he has been commissioned to make a large quantity of bookmarks for students who read in the Dayton School District and for a Dayton car event All Wheels Weekend. He hopes to expand his business soon.

Last year he made the front page of the Union Bulletin when he and his house manger lobbied for him to be able to do his sidewalk chart art in Downtown Dayton.

Ben is happy with his job and says other people should do their own job!

Alexa's Story: A Double Tall Order to Fill

Original profile written by Puget Sound Personnel

Customers at the Issaquah Gilman Starbucks know they can count on two things when Alexa is working: a spotless lobby and her engaging spirit to brighten their day. When she first met with Puget Sound Personnel (employment provider) in 2004, Alexa knew that her favorite coffee shop would also be the place where she found her dream job. A family contact helped open the door for PSP to develop the ideal cafe position for Alexa where her professionalism and ability to remember names, faces and drink orders keep loyal customers coming back.

“At Starbucks my co-workers are really nice and helpful and we sell
amazing drinks like Frappuccinos.”

After expressing a desire for more work hours and added challenge, PSP developed a second job for Alexa as a hostess at Applebee’s in Bellevue in the fall of 2009. As the first and last face patrons see when going through the doors, Alexa makes sure that every customer's experience begins and ends in a positive manner. Her work ethic, attention to detail and love for people have helped make her a workplace success with customers and co-workers alike at both job locations. And, that's a double tall order to fill!

"I love both my jobs. At Applebees, my co-workers are also very nice and
it is a fun place to work. Everyone is very friendly to me.”

Alexa is highlighted in this month's Starbuck's newsletter and is scheduled to speak at corporate headquarters this month. Way to go, Alexa!

Julie's Story: 10 Years and Counting

Julie has been working as an Administration Secretary for the Department of Human Resources for 10 years, where she works hard doing data entry and checking the website for broken links.

Julie uses Dynavox to communicate with her computer.

 "I never envisioned myself doing this," she says. "I like my boss. I like going to work. I don't like sitting at home."

What does she like best about her job? Without missing a beat, she answers: "The money."

Eric's Story: Having the Life You Want

By Guest Contributor, Eric Matthes

I am an Outreach & Advocacy Coordinator for The Arc of King County. My greatest accomplishment is realizing that I am more of a person, being humbled and responsible for my actions. 

I understand what it feels like when you give yourself up for others and think less of yourself, as long you take good care of yourself and just know how brave and intelligent you want to be.

I came to the [conclusion] that letting people have choices and independence [means] having the life you want. 

Eric Matthes, Outreach & Advocacy Coordinator
The Arc of King County

John’s Story: From Professional Volunteer To Community Based Employment

A few years ago, I went to DC for my second trip to The Arc’s national policy seminar. While we were there, we met with Congresswoman Cathy McMorris Rogers. When she asked what I wanted to be, I told her: “I want to be a taxpayer.” 

by John Lemus, Guest Contributor

From 2005-2013, I flew many miles for my service on the State DD Council, and I had a lot of small talk with people in the seat next to me. The inevitable question was always asked: “So what do you do?” My answer was almost always: “I’m a professional volunteer.”

In January 2013, I was able to answer the same question with the following: “I’m in charge of Community Relations for the largest Developmental Disability Non Profit in Spokane.” After many years of hard volunteer work and job searching on my own, I had been hired as the Community Relations Facilitator. I still remember the rush I felt signing my first offer letter.

On any given day, my job includes meeting with prospective new clients, going to schools to talk about the services SKILS’KIN provides, creating marketing materials, attending community meetings, attending resource fairs, connecting with city and state leaders, working with our promo vendors, managing our social media, planning launch events, and working to promote SKILS’KIN and our programs in the community.

I love my job. There’s nothing better than earning a paycheck and taking care of the things I need and want by myself! I work out in the community the majority of the week making connections for SKILS’KIN. Oftentimes, I find that people are surprised to see someone with developmental disabilities doing the job I’m doing. Most individuals who do the work that I do have 4 year degrees in public relations or marketing. It’s been really cool to be a part of breaking down the stigma that people with developmental disabilities can be successful in these types of roles.

I had a lot to learn in the beginning about the business side of the I/DD realm. For years, my career focused around the self-advocacy movement and advocating for policies and improvement; I now understand the bigger picture of how funding works, how services are provided, what the state program & waiver rules are, and what DDA has to do to implement them. Now, I know how to devise advocacy for programs around that.

One of the things that really surprised me about my job is how much I really needed to improve in certain areas. English/grammar and sentence structure has never been my high point. I’m blessed to work for an agency who understands this and who has created opportunities for me to improve in this area with the expectation that improvement happens.

SKILS’KIN is a data driven company. A lot of what I’ve had to learn on the business side is how to track lots of data for the items in our community relations plan and how to measure return on investment. I’ve learned to live the mantra of In God We Trust. Everyone Else, Please Bring Data.

A huge accomplishment is that this year I was accepted and received a scholarship to an absolutely amazing servant leadership program here in the local area. I’ve always wanted to go through the program, but the tuition is really steep. After only being with SKILS’KIN for a year and six months, they were willing without hesitation to fund the leftover portion of the program tuition. I love working for a company who supports me and is willing to invest in me as a leader.

If look back on my gap years, I would say the biggest piece of advice I would give to other individuals with disabilities looking for work is to try different things, even if they aren’t the jobs that you want. I knew what I wanted for employment, and I wasn’t willing to settle. This hurt me during my gap years. After I graduated from high school, I wasn’t able to find a job because I had minimal experience. I had been volunteering for my local Arc for a year. After I graduated from Community IMAGES, a local transition program, The Arc hired me as an AmeriCorps Volunteer. I worked for them for three years. After that, I still had trouble finding a job for seven years because I didn’t have experience outside of the disability field.

One of the biggest things I tell transition students is that a diverse resume is so important in a competitive job market. I would also encourage them to engage work incentive planners in their area. The myth that you will lose benefits because you are working is not true. In most cases, you may still receive a reduced cash payment; and if not, you may still be eligible for Medicaid through the 1619b program.

To employers, I would say that people with disAbilities are some of the most dedicated and hardworking employees you will ever have. We love jobs and providing for ourselves. Think outside the box. A lot has been done through customized supported employment to help make sure that, once you hire an individual, they will always have the training they need from their employment support specialists to help them retain their job or learn new tasks.

Five years from now, I hope to still be at SKILS’KIN, and maybe be Director of Community Relations! One thing is for sure: I wouldn’t be where I am today without a handful of amazing people who have supported me along the way.

My parents, who taught me the value of hard work.

AFS Team at The Arc of Spokane, for getting me started at a young age and teaching me to respect and understand the perspectives and struggles of parents who have children with disabilities.

Donna Lowary & Lance Morehouse, for teaching me everything you know and supporting me to move forward even when I made mistakes.

Marcie Osborne, who invited me to CEA’s annual employment conference where I met my current boss, and within a few month had signed an offer letter at SKILS’KIN.

The team at SKILS’KIN, who has been incredibly supportive of me and my visions for our community relations initiatives.

The DD Council, who invested many years of time and resources in me to help me become the leader I am today.

Shawn Latham: Connecting People to Their Community

Profiles in Employment: A Celebration of National Disability Employment Awareness Month

I’m currently the Peer Group Coordinator for the Center for Independence North Sound, one of four hundred Independent Living Centers in the country. I help people find local community services and assist them with making community connections that will make them more independent in their lives. I’m also a member of several advocacy groups.

During my time at this center, and also at two others, I found that making connections is an important step in finding a job, a roommate, and just good friends to hang out with.

It's important to always try to see what others have to offer.

I’ve learned no one is the same, and no two communities are the same, so my advice is listen and observe what your particular community has to offer.

Be Your Own Boss: Never Get Fired!

by Dylan Kuehl

I am a Renaissance Man. A man of many talents. I am an artist, motivational speaker, dancer, powerlifter, martial artist, drummer in a band, weekly community volunteer, bowler, starting a band that plays children's music and I love going to church.

Between the ages of 19-22, DVR (Division of Vocational Rehabilitation) policy required I fail at traditional employment before I could select self-employment. When their policies changed in 2004, I was allowed to create a job for myself where I was rewarded for my verbal and artistic skills. DK Arts is a PERFECT fit for ME. 

 
It is important that others allow themselves to be inspired by my business and see the possibilities in their own life. Find something that you love and brings you joy. Surround yourself with people who say YES and let NOTHING get in the way of pursuing your own dreams. 

Stay tuned for more profiles celebrating National Disability Employment Awareness Month throughout October... 

Life After High School: Gregory's Story

by Carrie Morehouse, Guest Contributor

Our son, Gregory, was born with a rare condition called Zellweger Syndrome. At the time he was diagnosed, the specialists informed us that because of his deafness, blindness, and cognitive delays, he probably would never learn or live in the community. They advised me to just bring him home and love him, but not to expect much. We took their advice, and Gregory has been abundantly loved!

We also ignored their advice, and Gregory was always presumed competent with the capacity to learn and grow.  In school he was offered numerous special programs for students who were deaf-blind. He amazed us with his abilities.

During his high school transition years, he was exposed to numerous community-based vocational opportunities and was enrolled in the School to Work program during his last year of school. School to Work is a partnership between school, the county, DDA, DVR, and the employment vendor to assist students in being gainfully employed with supports in place before they leave school. We engaged in Person Centered Planning and developed a plan to help provide meaningful opportunities for Gregory. 

In June 2013, Gregory graduated from the transition program at Lake Stevens High School in Snohomish County with a volunteer position. Six months after graduation, he got his first paid job at Any Time Fitness.

I was well prepared for the day when the bus didn’t show up come fall—in addition to work and volunteering, we set up a Medicaid Personal Care provider to be with him during the day and to keep him active—but it still wasn’t enough.  We soon realized that, despite various community activities, volunteering, and work, we didn’t set up social activities to build relationships with peers.

Regardless of engaging in community activities, his life was isolating and lonely. His sister went off to college and would come home with tales of her great big new life, with new people and new opportunities, and we realized that Gregory needed a great big life that included other people his age and more than one caregiver at home with him. 

I wished we would have worked on that more while he was in school so that he left with a circle of friends. We overlooked that, and it was much more difficult to create without the support of an already established/manufactured group of classmates.

The good news for Gregory is that he recently moved in to a supported living situation with peers and caregivers supporting vocational and recreational activities that keep him busy and connected to others. Now when he comes home or we visit, we learn about his great big new life that includes new experiences, new opportunities, and new friends.

Developmental Disabilities Endowment Trust Fund: Invest in Life

by Margaret-Lee Thompson, Guest Contributor

The Developmental Disabilities Endowment Trust Fund has a rich history in our state. It started at a coffee for a few Legislators in the middle 1990’s. Senator Dan McDonald (R) told us about a family friend, Barney, who had impacted him as he watched Barney age. He proposed the Endowment Trust Fund. We were all so excited.

A few of us parents participated in working on the bill’s language with Senate staff. After a lot of hard work and eleventh hour nail biting, it passed! It was the first of its kind in the nation, a public-private partnership that promotes investing and planning for the future.

Governor Gary Locke (D) appointed seven members to be on the DD Endowment Trust Fund board: four were parents that he knew and the others were professionals that Senator McDonald knew. I was one of the parents selected to be on the Board, and now serve as Chair. Out of the current seven members, six are family members who have a loved one with a developmental disability.

Organizationally, the Washington State Developmental Disabilities Council performs administration duties to our Trust Board, while The Arc of Washington State manages the Trust accounts and interfaces with the individual or family. Both of these organizations have long histories in our state in being involved in best practices for individuals with developmental disabilities.

Ben H. enjoying his ETF funds, saved throughout
the year from his work earnings.

All through the years, the DD Endowment Trust Board has paid exceptional attention to what would work well for parents, family members, and individuals with developmental disabilities. Careful attention was given to make sure the Trust is affordable and accessible through the following incentives:

• One-time enrollment fee of $600 that’s matched by the state in full after the end of the 3-year vesting period;
• Low $25 month minimum contribution; and,
• State matching funds on fees help to reduce overall costs.

Unlike an ordinary trust, which counts as an asset that can interfere with Social Security benefits and Medicaid funding, the DD Endowment Trust Fund is what’s called a supplemental (or “Special-needs”) trust by law. Funds in a trust account do not affect the eligibility for these benefits and services that are so important to an individual’s future.

We’ve growth quite a lot. There are now over 2,000 trusts, which include two types:

• Trust I, which receives contributions by family members and others for the benefit of the individual; and,  
• Trust II, which receives contributions by the individual.

Many of our sons and daughters have become Trust II holders to invest their work and other earnings without risking needed benefits due to asset and resource limits. The individually-based criteria for expenditures of the Trust work well for them.

The Trust I accounts set up by parents and family members bring a sense of calm for their son or daughter’s future.

The Board of the Trust gives great attention on decisions for you and your child’s future. Please feel comfortable in accessing information at the DD Endowment Trust website or by phone: 360-705-9514.

I hope to see our Trust grow from your participation!

An Uncommon Love Story

(by Diana Stadden, Guest Contributor)

A beautiful bride, a handsome groom, surrounded by family and friends celebrating their love, it seemed like a typical event in many people’s lives. But this wedding was not a typical one. Their love was foretold as something that would never happen, not because of common obstacles to a relationship, but because these two young sweethearts have developmental disabilities.

My son David, diagnosed with autism at an early age, and Brittany, who has a genetic disorder that includes a learning disability, met while in high school and attended the same church youth group. Brittany, a very shy and charming young lady, was introduced to David by a friend and they immediately shared a bond of friendship that grew into love.

A few months after they began dating, Brittany’s family came upon hard times and she needed a stable place to live. I invited her to move in with our family, sharing my room, enabling me to really get to know her sweet personality.

There were many things that Brittany had never had or experienced, one being a special birthday party, so for her 18th birthday we held a big birthday dance. Brittany and David’s love had continued to blossom and at the birthday party, with their family and friends surrounding them, David nervously got down on one knee and asked Brittany to be his wife. Eight months later they were married and began living their dream.

Today, they are settling in to their new life as husband and wife. They are both on a pathway to employment; David enjoys fixing computers and Brittany is working with children with developmental disabilities in a Head Start program through her high school transition program. Eventually, they plan to have their own home and someday start a family.

Everyone has the right to a full life, and they often just need the support of those around them to help make it happen. I have been blessed with a wonderful son, who I am so incredibly proud of, and a daughter-in-law who is everything I could have hoped for to share his life with him.

Believe your child is capable of anything and they will show you that they are!

From a very happy mom,
Diana

Beyond Labels

Beyond Labels: Erasing the Stigma of Invisible Disability features four Washington State parents  who share their thoughts on the importance of seeing and thinking beyond labels.

Please watch and share. It's an important discussion. Let's start talking.

Not So Big Announcement by Rachel Nemhauser

I’ve been keeping a secret for a while, but the cat is finally out of the bag.  After 9 months of work, commitment, effort, hard choices and occasionally going to bed with a rumbling belly, I have officially lost 100 lbs.!  You read that right – I have lost one hundred pounds.  I am slimmer and more fit than I’ve been since becoming a parent and I feel really great about it. 

I gained a hundred pounds over the course of 13 years as a mom.  My devotion to my kids and family meant neglecting my own health and needs for a long time.  The years of worry over Nate’s development didn’t help, and I spent almost a decade using food as a method to unwind and cope. I told myself I needed and deserved the rich, sweet, delicious foods I was eating because my days were really hard.  And they were (and sometimes still are) really hard. A bowl of ice cream definitely didn’t make a speech therapy session more effective, or Nate’s hyperactivity slow down, but it may have made me care a little less.

Being overweight was never devastating to me.  I was active, I could keep up with my kids, my health wasn’t suffering yet, and my husband never stopped finding me attractive.  I had friends who loved me, a career I was proud of, and clothes I looked forward to wearing.  I was a good friend, a good citizen and a fun person to be around. I was OK with who I was, didn’t want the failure of diet after diet under my belt, and wasn’t driven to change. I secretly rolled my eyes when conversations turned to fitness or nutrition, and knew that immersion in those worlds was not my thing.

How did it happen then, and how did I stick with it for so long? Certainly parenthood didn’t become easier.  Nate still brings worry, exhaustion and stress to my daily life. Ice cream still seems like it would help. I’m no more an expert on fitness or nutrition now than I was 9 months ago but I do have some thoughts on weight loss to share:

1)      I never could have done this alone.  My husband and I dramatically changed what we ate, but we did it together and held each other accountable.  My close friends supported my pickiness around dining out and my kids kept their complaining about our diet changes to a minimum.  I needed every ounce of their support and encouragement and was lucky enough to get it.

2)      My whole life has not changed.  I’ve heard other people who have lost a lot of weight say that their weight loss changed everything.  I absolutely look better in my clothes and have more confidence in my appearance than I did before.  I also have more energy and stamina, and my feet hurt less.  Most aspects of my life remain the same though.  I still find the topics of nutrition and fitness kind of boring.  I still have back pain.  My kids still frustrate me and my house still seems to always be messy. I’d like to think I’m still funny and a good friend too. The things I am most proud of about myself haven’t changed, and are completely unrelated to my weight. 

3)      For me, exercise played only a small role in my weight loss. I never once in 9 months set foot in a gym, and for most of the time simply walked briskly for 30 minutes a day.  I’ve recently incorporated jogging into my weekly routine but most of the time I stick with walking. I lost weight because I changed the way I was eating, and not because I spent hours working out. 

4)      Goodbye sugar, hello veggies. I cut out ALL sugar and carbs and relied primarily on eating vegetables and protein, along with food provided to me by the diet program I used.  For me, eliminating all sugar meant I stopped craving sweets (I never would have believed it if it hadn’t happened to me) and didn’t experience extreme hunger most of the time. I almost never cheated because I didn’t want the cravings to come back. At first, eating 2 cups of veggies at every meal was almost impossible and I begrudgingly choked down more than my fair share of Brussel sprouts and cauliflower, hating every bite.  However, over time I’ve learned how to prepare them in a way that I can tolerate (and occasionally even manage to enjoy) and eating veggies has become my habit. 

5)      My weight loss is a lifetime commitment. I am only a few pounds away from my goal weight and then it will be time to shift gears into “maintenance” mode.  Truthfully, I’m scared.  I don’t want to gain the weight back, but I also don’t want to obsess about food for the rest of my life.  I hope that if I keep my support system around me, stay moderately active and continue to be mindful of the food choices I make, I’ll keep the weight off.  I will try my best, and that’s all I can do. 

6)     Please don’t offer opinions on whether I should stop losing weight, or should continue to lose more.  My doctor and I together have chosen a goal weight that is right for me, based on my age, my build, and my health goals. Although well-meaning and loving, those comments and inquiries feel like an invasion of my privacy. I feel strongly that what I weigh and what I want to weigh is only between my doctor and me. I love compliments about my new look, but please avoid talking numbers with me.

I’m still a mom who is devoted to her children and family. I’m still the parent of a son with a disability.  I’m still great at snuggles but not so great and imaginary play-time. I’m still irreverent and tend towards eye-rolling when talk turns to nutrition. I’m a lot more likely to smile at myself in the mirror, but I’m still unlikely to care what brand of jeans I’m wearing. I have accomplished something pretty big, but I know I don’t have all the answers.

I am still Rachel, but now I am 100 pounds lighter. 

 



What are you waiting for?

Close to 14,000 individuals are waiting for services from the Developmental Disabilities Administration (DDA)—a group so large, it's been given its own name: the No Paid Services (NPS) Caseload.

As a result of legislative action and upcoming changes to key state programs, DDA anticipates being able to provide services to as many as 5,000 individuals who are currently on the NPS caseload, beginning mid-2015 (and beyond). Most will be enrolled in the Individual & Family Services (IFS) program, which is for children and adults who live in the family home. IFS includes services such as respite, therapies, behavior support, and other interventions that help the individual continue to live at home.

Because DDA will identify individuals from a list of those who have been assessed to need services, it's important to make sure you're on the Service Request List. (Note: This is a new term to learn for those who are used to hearing wait list or enrollment database.)

If you or someone you know is on the NPS caseload, consider this a friendly reminder to contact your local DDA office and leave a message, asking to be assessed for IFS (or confirming that you are on the Service Request List if your son/daughter has already been assessed).

Here are the numbers:

Region 1: (Spokane) 800-319-7116; (Yakima) 866-715-3646

Region 2 (Seattle) 800-974-4428; (Everett) 800-567-5582

Region 3: (Tacoma) 800-735-6740; (Olympia) 888-707-1202

Attention: Changes Ahead

Three significant changes are on the horizon that will impact almost all individuals receiving services from the Developmental Disabilities Administration (DDA).

Although the changes do not go begin to go into effect until next spring and continue on through 2017, we want everyone to have a good understanding of what they mean and why they're happening.

The changes will affect the following services and programs:

• Individual & Family Services
• Home & Community Based Services (HCBS)
• Personal Care 

If your son or daughter receives services (or is waiting to receive services) through any of these pathways, be sure to read Changes Ahead at the Informing Families, Building Trust website.

Ten Tips for Visiting my Family by Rachel Nemhauser

In a few short weeks my older son Isaac will be having a Bar Mitzvah, and I’m kvelling. (Yiddish; bursting with pride). He’s worked for years to prepare, and, like generations ahead of him, will become a man in the eyes of our community.  Simultaneously, and not coincidentally, the Nemhauser family and Bellevue, Washington will be invaded!  Almost one hundred loved ones from around the country will travel to Bellevue to celebrate this incredible occasion with us, to show their love and support of Isaac, and to be together as a family on this special day.

I am overwhelmed with gratitude and excitement that so many people who mean so much to us are putting in an incredible effort to fly across the country to be with us.  I’m moved and can’t stop smiling with anticipation.  I’d be lying though if I said there wasn’t a degree of trepidation mixed in with the anticipation.  While Isaac is undeniably the main event, I have little doubt that Nate will do his best to provide the side show entertainment all weekend.

Having visitors can be tricky with Nate around.  Nate’s a little slow to warm up to visitors. If you stop by, you can count on being told upon arrival, “My house!  Leave!" He doesn’t bother himself trying to put his best foot forward, and really isn’t all that interested in a weekend dedicated to lavishing his older brother with attention.  Instead of demonstrating his growing vocabulary, emerging social skills, successful toilet training and full-body hugs, he’ll likely choose to scream loudly and often, refuse to greet visitors, and amp up the obstinacy he’s so good at!

For many of us raising children with disabilities, welcoming people into our homes can be stressful.  There is nowhere to hide the worst behaviors and deficits, and everyone can see the furniture he’s ruined (or is that just me?).  So, in preparation for our most welcomed and highly anticipated visitors, following are some tips for visiting our family.  I believe they can be applied to visiting the homes of other families with children with disabilities. 

1)      Focus on skills, not deficits.  When visiting our home, you will definitely notice Nate demonstrating inappropriate and unacceptable behaviors.  He will hit his mom.  He will scream when he doesn’t get his way.  He will be spoon-fed instead of feeding himself.  Keep in mind though, that for every “bad” behavior you see, there are other skills we’ve been tirelessly chipping away at.  Did you notice he’s toilet trained? He says please and thank you?  He most likely won’t undress in front of visitors? We work hard every day to improve, and we also have become very good at picking our battles!  Most importantly, we’re so incredibly proud of how far he’s come.  (I’m kvelling again…) 

2)      Transitions can be hard.  For us, it happens Every. Single. Time.  Nate doesn’t stop what he’s doing and move on to the next activity without some protest.  Sometimes it’s a little yell, and sometimes he’ll make your ears ring with his scream.  We almost never decide to NOT switch activities.  His protest doesn’t mean he doesn’t want to do what’s next, and it doesn’t mean he’ll protest the whole time.  Just push through, wait five minutes and he’ll recover. Ear plugs are optional but recommended.

3)     Remember that he understands more than he speaks.  Nate listens and understands what you’re saying.  His feelings can get hurt, and he can form ideas about himself based on what he hears people say about him.  Please be thoughtful about his feelings and self-esteem. Of course, he’s a fantastic secret-keeper so you can confide in him and know with confidence that his lips are sealed.

4)     Let him warm up slowly. Start with a wave from across the room, or maybe a high five.  Nate may not remember you from last time he saw you, and might be feeling more stress about your visit than he can express or understand.  Give him time and lots of chances. Be interested in his toys, his room, his favorite TV show, his xbox and his dog.  He’ll come around.

5)     Don’t take it personally.  Nate will probably tell you to leave, and maybe even to shut up while you visit.  He might turn his back on you and refuse to acknowledge your presence.  Please, please, please don’t feel hurt.  He isn’t intentionally trying to hurt your feelings, and is just expressing his discomfort in the only way he knows how.

6)      Ask lots of questions.  We understand that Nate is different than any other kid you know, and that much of what he does appears confusing or weird. It’s amazing though that once you know Nate better, a lot of his behaviors and language are more understandable. Ask us questions and we will do our best to answer them.  If you ask a question we’re not comfortable answering, we’ll let you know.  Mostly though, we’d love to tell you what we’re working on, which methods we’ve found helpful (and which we have found completely ineffective), and our thoughts about Nate’s future.  In fact, he’s one of our favorite topics!

7)      Give siblings all the attention they deserve.  While Nate’s antics can take up more than his share of the attention, remember that Isaac is here and deserves the spotlight too.  He’s quieter about it, and will probably not color on any walls or wet his pants, but he needs and deserves to have his family show equal interest in his goals, challenges and plans for the future. Just like Nate, he is an incredible kid.  In fact, show interest in his xbox and his dog and you’ll make him very happy too!

8)      Watch how we interact and do what we do.  The best way to learn how to be with Nate is to watch his family.  Mom, Dad and Isaac are Nate experts and know what works.  We know when to be firm, when to use distraction, when to offer a reward, and when to resort to a time out. Most everything we do is thoughtful and intentional, and done with years of experience behind it.  Be wary of offering suggestions, especially in the middle of a stressful situation.  It’s safe to assume we’ve tried everything (twice) and have zeroed in on what does and doesn’t work for us.

9)      Jump in to help. Don’t wait to be asked.  If Nate needs to take a walk during a long sit-down dinner, offer to take him.  If he wants company watching Justice League, sit with him.  If it’s bed time, offer to read him a story.  It’s not always easy for Nate’s parents to ask for help, but it’s usually very much appreciated.

10)   Love him for exactly who he is.  Nate is silly, loud, inconsiderate, affectionate, extremely messy and a total handful.  He can make you laugh, and then minutes later cause you to pull your hair out in frustration. He will drop a rock in your drink when you’re about to take a sip and tell you to shut up when you compliment his t-shirt. Love him in spite of it.  No, better yet, love him because of it.  Take time to get to know him and learn what makes him such an incredible, complex, multi-dimensional person.  Nate is one of our never-ending sources of love and happiness, and we are so overjoyed to share him with you.

 

 

Are you the parent of a son or daughter with a disability? What other tips would you share with people visiting your home? What do you wish everyone knew before walking through your door? We'd love to hear from you!